My journey with Huntington`s Disease

It is interesting to notice that many pivotal moments, in contrast to popular believe, are not engraved in your memory – or at least not in mine. Before I started to write this piece, I had to dive into my medical paperwork. I had forgotten that my mom was officially diagnosed with Huntington’s Disease (HD) on August 9th, 2010 (I had the ‘2010’ correct though). Why was this is pivotal moment? It marked the start of my journey. A journey that is still ongoing. This is the first time I share the work perspective of that journey.

HD is a rare autosomal dominant neurodegenerative disease without a cure. The scientists among you will have immediately dissected this sentence. Indeed, that meant that from August 9th, 2010 I was officially at risk of being a carrier of this disease. I got my own test result back on February 25th, 2013 (this time I had the year and month right). It was positive for Huntington’s Disease. I traded three years of uncertainty of ‘will I have HD’ for a lifetime of ‘when will HD show its face’.

A few weeks later I started as a post-doc at the Vrije Universiteit Amsterdam. Since the wounds were still fresh, telling my colleagues about HD was not an option for me. I also did not tell my boss with whom I already worked for 7 years (we moved our lab from Utrecht to Amsterdam at that time). Over the years that followed, I slowly brought the news to family and friends, ensuring that they were dealing well with getting the news. After that, I started to deal with the emotional burden it had on myself (in hindsight, not the smartest order of doing things). I saw a psychologist for a period of time. Thinking back to that, I choose one close to work. This way I could take care of myself without people at work noticing I was taking time off to do so. Personally, I do not think they noticed and apparently there was nothing that triggered questions about lack of performance or working attitude. But maybe I am mistaken and no one told me they noticed. Who’s to say.

After about three years or so, I finally gave HD the place and space it needed and acceptance settled in. Till that point, I still did not tell anyone at work. Why would I? Work-life balance means keeping life out of your work, right? However, things changed after that. With acceptance came the urge to reach out to other people affected by HD. One thing lead to another (that’s another story for another time) and before I knew it I got involved in national and global patient advocacy. On top of that, I wanted to raise awareness for HD. And raising awareness without speaking out in public is difficult. Doing so would mean people at work would notice. I was in doubt.

Side step; people in the HD community often face lack of understanding and even get discriminated against at their work place. HD is a rare disease with very diverse and slowly developing symptoms. Patients are frequently not aware themselves that they have become symptomatic. First signs could be (but are not exclusively) becoming fidgety, having shorter attention span, losing IQ points, and becoming erratic in behavior. Often they are perceived as under performing and difficult to work with. As a consequence, they are laid off or sidelined quite frequently or struggle to find a job at all (even before symptoms start). This, and many other reasons, has resulted in many HD gene carriers not to be open about their gene status. Regrettably, hiding your true identity is the best way of assuring some form of normal work life.    

Why the side step; around this moment in my life I was still a post-doc (meaning temporary contract) and discussing about a renewed contract and the possibility of getting tenure (fixed position). I was in doubt. Would going public mean that I could forget about getting the job I liked? I struggled with this for a while. In the end I decided to talk to my boss and tell him about my gene status. It was somewhere in 2017 (no clue about the day or month). I remember two distinct things from that conversation; I was extremely nervous about opening up and my boss was incredibly supportive when I did so. The latter shouldn’t have been a surprise to me, as he always has been that kind of person, but coming from a community that faces lack of understanding I (unnecessarily) feared the opposite.

Somewhere during the conversation I brought up my concerns regarding getting tenure while having HD and being open about it. It was then that he spoke some magical words: “if they [the management] do not want to give you a position based on that, this isn’t the place you want to work and you should move on to somewhere else”. I have never felt so supported and he was actually right. Would you want to work in a place that cannot accept you for who you are? For me that is a definite no. 

From that moment on I slowly started to publicly speak about HD. First online, on my Facebook page, and during patient meetings. But then came a unique opportunity. A clinical trial for a potential HD treatment reached the national news and the NOS (national public news network) got in contact with me. They wanted to talk to some patients and write a short background piece on the impact of this news. I decided to go for it. The evening the piece went out (December 12, 2017 –  I knew it was somewhere around the end of 2017!), I was nervous. It was the first time I would be totally exposed. There was no way back from here on. How would people at work react?

In short, I was overwhelmed by the number of supportive messages. The weeks after I had many great conversations about myself and HD in general. Colleagues from various departments were curious about many aspects of the disease. Looking back, I feared a lot of things and did not expect this extremely positive outcome. It was surreal. This response was the start of me fully opening up about HD though! Since then I have made many steps to become an even better and more effective advocate for the HD community and I never had the fear of losing my job over it. On the contrary, I even use HD in my courses as the disease has a couple of unique features that are great for discussions with students.

Reflecting on it, I should have opened up at work about my gene status much sooner. Work-life balance is a bit of a weird terminology. Work is an integral part of life. What happens in life impacts work and vice versa. They are interconnected, not two separate things. Not everyone might be so lucky to find a supportive work environment, I am aware of that. But does that mean we should hide who we are and what we go through? I don’t think that is a healthy approach in the long term. And for those that wonder; I get annual checkups and have been deemed asymptomatic so far. I know it will come, but when it comes I know I will find a supported way of dealing with this.

P.S. In 2019 I got tenure and HD was not even a topic. My concerns were mainly that; mine!

-by  Rob Haselberg

Assistant professor Vrije Universiteit Amsterdam, r.haselberg@vu.nl

HD patient advocate, rob@huntington.nl

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